- Documentation: My friend and co-worker lost her daughter who had just had a baby. She had her baby right before I had Kaitlyn. I wanted to capture my memories of the girls and our experiences so that if anything ever happened, they could have this to know they're loved and wanted and how I cherish them - and when I say "them" or "the girls" - that's certainly Taylor included. And - so when I'm old(er) and gray(er) I'll remember all of these times too!
- Health: My next reason was due to all of the dr's appointments I was having to go to with the babies. At 6 months, Kaitlyn was diagnosed with a Variant of Turner's syndrome. By the time Kaitlyn was 9 months, I was pregnant with Macy..so back to the dr I go! Kaitlyn was having to undergo lots of testing to then find out Macy had something wrong with her heart valve with they thought might be an indicator of Down Syndrome. Turned out, after high risk dr's and cardiologists, that it is "only" Patent Foramen Ovale, which is an abnormality, not a disease. There are no known risk factors. Apparently 1 out of 4 people have it and most never know. With that being said - I want the girls to have a place to look back at and know the names of dr's and what all has been done or identified - or not identified as the case may be.
After much prayer, deliberation and research (4 years worth) Bruce and I have decided that Growth Hormone Treatment is the right thing to do for Kaitlyn due to her Variant of Turner's Syndrome. I have researched countless websites and joined several groups on Facebook with girls that have Turners as well as parents of the girls. I have also met a girl Kaitlyn's age that has classic Turner's along with her mother. They live in Florida but were up here visiting so we had the pleasure of meeting and sharing stories while letting the girls play. Another couple I have known since I was Kaitlyn's age has a daughter too that has this. Bruce and I were able to set down and visit with them recently. That family and ours are starting this hormone therapy at the same time coincidentally. Since 1 in 2000 girls are affected by Turners and many go undiagnosed if symptoms are few, I think it's rare and an odd blessing to have someone who understands what it takes to come to this decision and what that means for our daughters, to accompany us on this journey too! I say "odd blessing" only because you hate for anyone to have health issues, but we're blessed to have each other.
A blessing is a blessing and I'll take them anyway they come!
On Dec 20th, 2013 we had a scheduled appointment with Dr. Joel Steelman, Kaitlyn's Pediatric Endocrinologist with Cook's Children's Hospital Specialty Clinic. This appointment initiated our Growth Hormone Treatment. Such a brave girl - and Macy is always there for a good dose of moral support ready to have her measurements taken too!
I understand that some people are short - and those people probably reach their growth potential on their own and their height is as tall as they were meant to be. However, with this syndrome, Kaitlyn won't be able to reach her growth potential without this treatment. So it's not about being short, or cute or little, it's about reaching her full potential. I also think it's important to note that I've heard kids in Macy's class, 2 year olds, asking who the baby is with Macy. Kaitlyn of course gets frustrated and defensive. If this is happening at the age of 4 for Kaitlyn - think how the rest of life will be. She's pretty easy to spot in this crowd - but maybe not others! (She's the one shielding her eyes from the sun so she can see her momma!)
To plagiarize a bit from The Turner Syndrome Foundation :
Short stature is the single most common physical abnormality in Turner’s syndrome, and individuals not treated with growth-promoting techniques achieve an adult stature 20 cm shorter than that of the normal population to a final height on average 4'8".
GH deficiency can be treated through growth hormone replacement or injections of growth hormone. GH deficiency is treated by replacing GH with daily injections under the skin or into muscle. Costs of treatment in terms of money, effort, and the impact on day-to-day life, are substantial.
Dr. Steelman is suggesting that Kaitlyn will probably need to be on GH for about 9 years.
Growth Hormone is a specialty drug that you get from a specialty pharmacy. It's not something you get from your local CVS or Walgreens. There are several different manufacturers of this drug but the one we will be using is called Norditropin.
Their website is full of answers to all kinds of questions! They have excellent informational videos too that we have watched and Kaitlyn has watched with us. Visit the Norditropin Website
The drug is an injection that will be administered on a daily basis. The pens look like this:
The needles are some of thinnest on the market according to the site. The site does a great job comparing the needles to a dime. A dime is 18mm and the needle is 8mm. Kaitlyn could actually put the needle on the pen.
We have had phone calls from the drug manufacturer now to setup help with copay and to schedule the nurse. We've had phone calls from the specialty pharmacy to schedule delivery. The medicine does ship overnight and packed in ice as it needles to be kept refrigerated. The medicine will arrive Wednesday, January 29th, 2014 and by the time this blog entry is posted, we will have scheduled the nurse to come to our house to teach us how to administer it. The drug manufacturer is also sending a backpack filled with items for travel and information that should arrive by tomorrow too.
One last noteworthy piece is, in all the research and girls I've been able to reach, EVERY ONE I have seen that has taken GH has been most thankful and happy about the results. I have seen many say they wished they had the opportunity to take it.
We're very excited about the possibilities this brings for Kaitlyn. We're very nervous about the idea of a daily injection to a 4 year old...on through to a 13 year old (and we're nervous to think about a 13 year old Kaitlyn too haha). We're hopeful that we're making the right decision. We're anxious to get this started and to see results. We're a little bit scared. We, I feel, have to some extent, selfishly, gotten to really enjoy Kaitlyn being little. They grow so fast as it is and when you have two so close in age during this infant and toddler stage they make another mile stone in a blink of an eye!
One more minor health related topic to mention is: When we began using
the ECDC, we switched pediatrician's and started using Dr. Jay Murphy
with Fort Worth Pediatrics Clear Fork Office. We did not get off to a
good start but I think we're starting to have a better understanding of
one another. The kids are both current on their shots, which I had let
slip for a while, but they're good now and Kaitlyn is all ready for
Kinder! (no flu shot though - for now anyway)
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